The Primary Palliative Care Needs of People With Parkinson Disease, Their Care Partners, and Health Care Professionals.

Abstract

The National Consensus Project Domain Structure and Process of Care focuses on a comprehensive assessment, patient and family engagement, communication, care coordination, and continuity of care across care settings. For people with Parkinson disease and their family care partners (n = 20), a qualitative descriptive study was conducted to examine elements of the Structures and Process of Care and the primary palliative care needs of people with Parkinson disease, their family care partners, clinicians, and community services and programs (n = 48). The data yielded 4 themes that highlight the needs of this population: (1) uncertainty about the progressive speed of the disease and its symptoms, (2) the need for advocacy to access needed care, (3) poorly coordinated care and limited access to palliative care, and (4) awareness that nurses are untapped resources within the health care system.